With summer action winding down (gasp!), I thought it would be appropriate to catch you up with what’s been going on over the last few months. Honestly, my mind is in a bit of a fog lately and up until about a year ago I would have never told anyone about what actually is going on in my world. All of your kind and encouraging comments as I have shared my story has been so life-affirming and has created a safe space where I can continue to share details of my beautiful, complicated life. Although lately, it has felt more complicated than I would like.

It’s hard to know where I should even begin but I have to start somewhere! Ok, let’s start with what seems to be the topic on almost everyone’s mind about 23 hours a day: Instagram. Over the past year I have started following other accounts revolving around SMA, and it has been both positive and stressful.

(Confession: This is actually a huge transformation for me because I have spent most of my life avoiding people or images of wheelchairs. I used to feel extremely uncomfortable with being around wheelchair users because it was like looking in a mirror, and I didn't want that to be me. I have since done a 180°, realizing that by avoiding others in wheelchairs, I was running from my own story [thanks Brene Brown!]. With starting this blog, I've discovered my true passion is disability awareness. Go figure. Another confession: Putting into words what I used to believe feels pit-in-the-stomach awful and I feel disappointed and slightly disgusted at my unkind and prejudiced attitude. Whew! I haven't even gotten to the point of my post and I've already had a therapy session!)

But getting back to Instagram, it has been really good for me to follow other people with SMA. I have been able to learn so much about self-confidence and what it means to never give up (one of my favourite sayings, thanks to the Gwendolyn Strong Foundation). So, it wasn't until I opened up my heart to the SMA community that I learned August is SMA Awareness Month. I also discovered the world of Spinraza but in doing so, my own world began to tilt on its axis. If you're thinking, “What in the world is she talking about?”, let me explain.

Spinraza is the first ever FDA-approved drug to treat SMA. Yes, maybe in the past different people have tried different treatments, but none have stood the test of clinical trials like Spinraza. Instead of just managing symptoms (e.g, massages for nerve pain, tracheotomy for respiratory failure), Spinraza targets the genes responsible for muscle tissue and actually makes you stronger! Administered by a giant needle in your spine 3 times in the first year (called loading doses) and once a year after (booster), people can notice a difference almost immediately. Children who receive Spinraza early on now have a chance to bypass some of the harshest symptoms of SMA; adults may not experience such results but it can at least stop the disease from progressing. Seeing people's results on social media every day, it brings up a whole bunch of emotions. With the injections, would I gain strength enough to be able to eat some of my favourite foods again, or to not get exhausted by the simplest of tasks, or having my voice strong enough to be heard in a crowded cafe? These are just a few real-life examples of what Spinraza can do.

No longer some sort of fantasy, we are now living in a post-Spinraza era, and the results are mind-boggling… oh, wait. Well, at least people in the States are living in a new era. In Canada, the Government has only approved funding the drug for babies 7 months and under who have SMA Type I (I have Type II). Thanks to social media, it’s so bizarre to know that this treatment exits but to also know that it is beyond my reach at this moment, and maybe forever.

Now, you may be wondering why I wouldn't just get the Spinraza anyway and pay for it out of pocket. Remember the loading doses I mentioned before? You would probably think it would be a typo if I were tell you that each dose costs $350,000 CAN. I wish that was the case, but nope! That would mean that the first year of Spinraza would cost over 1 million dollars {insert all the sick emojis), making it the most expensive treatment to ever be approved by the FDA.

No matter how much I try, I cannot wrap my head around this number… or any of it, for that matter. I have such conflicting feelings about this all. Am I over-the-moon happy that a treatment exists or devastated that it didn't come sooner? Am I happy for other people who are already on their 8th dose or resentful that I haven't even had the chance for 1? Do I consider this a miracle? Do I even believe in miracles? Do I want the treatment? Is it even morally acceptable to spend so much money on a person's health?

While I was still wrestling with these seemingly impossible questions, I got a phone call about a month ago from Muscular Dystrophy Canada that put me from a bystander to being in the arena. It turns out MDC is actually trying to appeal the Government’s decision to make it so that everyone with SMA could receive Spinraza. MDC was giving people across Canada the opportunity to have their voices heard. As the woman on the phone talked about health care advocacy, I knew how much I wanted it.

I spent a few days pouring my heart into a 6-page report saying that I wanted to be given a chance to improve my quality of life, or at least stop the muscle atrophy from getting worse. I have noticed so much progression in the last 5 years that the thought of deterioration now carries a lot more weight. I also signed a petition, which you can find here.

However, I also refuse to stop living my everyday life until Spinraza is funded. The show must go on! I am anticipating the start of my practicum in the fall, and trying to enjoy the last few weeks of summer.

Thank you for making this a safe place to sort out some of these messy feelings and powering through the medical jargon. I know this was probably a lot to take in but if you have any questions, I'll try to answer as best I can.

- Crissi xo